SUFFERING AND THE SPOON THEORY

The last few posts we have been processing the problem of pain and suffering. A couple of months ago I asked senior staffer and Momma cum laude Cathy Groves to share with the Gravel Road some things she has learned over the last few years in suffering with her chronic illness. What she relates below will be helpful towards better understanding those in our region, on our teams, and even in our families that have to deal daily with pain. Thanks for the insights and blessing Cathy- I know this cost you a spoon or two. - Bert


"Sometimes I think that being chronically ill is like being someone who has recently had a death in the family all the time. Few people know what to say, and they feel badly because they truly want to say something. You feel badly because you want to say that everything is fine and getting better, but that's not true. All this makes life awkward for both sides.

I don't think of this as anyone's fault, just the realities of neither one knowing what to do or say. I get embarrassed because I know they feel awkward; they get embarrassed because they know I do. The article below on the spoon theory by Christine Miserandino (which Bert has edited and shortened) has been helpful in getting people beyond sympathy to empathy with the lifestyle of chronic illness.

One thing I would add is that in spite of the "spoon shortage," I consider loss of my health to be one of the greatest earthly gifts the Father has given me. Continued brokenness ushers me in to the "secret place of the Most High" like nothing else, and I do not feel like a victim. Rather, "all the days ordained for me were written in Your book before one of them came to be." He knew what was absolutely best for my life, and He gave it. Even though I frequently don't know how to bear it, I wouldn't trade.

Corrie ten Boom said, "God's love still stands when all else has fallen." That is true, and I know it." - Cathy

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner talking. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare and then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked because she came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

She asked what it felt like, not physically, but what it felt like to be me, to be sick.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons,” a gift most people take for granted. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. I told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. “You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Getting dressed was worth another spoon.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. A person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. Unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. The hardest thing I ever had to learn is to slow down, and not do everything. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. Everything everyone else does comes so easy, but for me it is one hundred little jobs in one. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. The difference between being sick and healthy is the beautiful ability to not think and just do. I miss that freedom.

I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.” I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything.